Why Can't We Talk About Death?

It has been nine and a half months since Elise passed away. Leading up to her death, and in the nine months since she passed away, I have really struggled to comprehend why we are so terrible about talking about death in our society. Especially when so many other societies and cultures embrace death so openly.

As I have reflected on this, I think we as a society focus too much on the how and why somebody has died, rather than the life they lived. As a society, we want the "gossip" and "juicy details", but we are so quick to run away from things that make us uncomfortable. I have friends that have lost loved ones in some truly heinous crimes, terrible accidents, suicide and through debilitating illness. For all of them (and myself) the result is the same. Their loved one is gone! There is deep sadness that comes with the death of a loved one no matter the circumstances. 

The circumstances surrounding the death of Elise are a part of the grief process for me, but that doesn't mean I can't or don't want to talk about it. She is gone and no amount of avoidance is going to bring her back or bring about great healing for me. It doesn't work that way! Rather than some vague blog post, I'll go through some of how this happened in our house.

Over numerous years, Elise experienced several episodes of her gastrointestinal (GI) system failing on her. Various medical interventions over the years worked to get her back on track. Sometimes this was a slow process and sometimes it happened pretty quickly. During one of these times of failure, in November of 2021, the medical team was not able to find any real cause. The struggle for a cause had gone on for more than a week and the doctor on service that week mentioned casually, "this is common in kids with brain dysfunction". It was such a passing comment that I was caught off guard. As we began to discuss this, the doctor was shocked that this was never something discussed with us previously.

We were fortunate to have started a relationship with the palliative care team the year before during another time of tremendous struggle for Elise. The doctor offered to have that team come by and discuss this more in depth which I certainly welcomed. When the palliative care team showed up later that day, they had this book to share with me. Those that know me well know that I am not a huge reader. Seeing that book just reminded me of homework and I had very little interest! However, I skimmed it and told Kelly it looked like it had great information. She is the reader in our relationship. She read portions, made lots of notes and felt it was full of some potentially helpful information. Sometime that following week, I felt that I needed to take a more serious look at the book and see what it said. As it turned out, I read the whole thing in about three days. Trust me, that is a record for me! So much of that book could have been a blueprint for our life with Elise. We wished we would have had it years earlier. It may not have changed the outcome, but we would have felt more informed as we struggled along with so many of the "common" aspects of our child with "severe neurological impairment".

Elise went into the hospital because she could not keep anything down and was vomiting constantly. As often happened, the vomiting lead to higher seizure activity and the hunt was on for a cause. She went through periods of complete "gut rest", which is taking in no food or fluids. In the last couple months of her life, she would go in to the hospital with her GI system not working and things would immediately improve. After a couple of days in the hospital, we would be sent home only for failure to start within hours of being home. It was a challenging time for sure. In one of those short stints at home, in the midst of GI failure, it occurred to us that maybe this was her way of communicating with us. She could not say "I don't want to do this any more." But, she could show vast improvement in the hospital only to be sent home to go right back to square one. We changed everything we could in how and what she was being fed and nothing was working.

The last time she was released from the hospital, we knew that it was completely up to her what would happen. She would either thrive on this new plan, or we were out of options and had to call in hospice. Nobody wants that to be their two options. In the end, her GI system failed and her body began to shut down. Her time on hospice was pretty short and the end came very peacefully. For that I am thankful.

Losing a child is "out of order" in the circle of life. It is hard to comprehend. There is an odd peace and also so much internal struggle. It is hard to explain. When talking with someone that has recently lost a love one, don't be afraid to ask them about it. You should be able to tell in the first few seconds if they want to talk about it or not. Sit in your own discomfort and deal with it. You will get to leave that conversation and your discomfort will be over soon. The person who lost the love one will be sitting with that loss of a loved one for the rest of their lives.